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Facial Pain with MS

Posted by jjb6 @jjb6, Apr 7, 2023

My husband was diagnosed with MS 3/20 and in 9/20 started having excruciating facial pain on left side of face and head diagnosed as TN. He has no compression of the nerve. He has been told it’s part of his MS damaging the nerves. The facial pain presents in all kinds of ways, but not with the traditional triggers like eating, drinking, brushing teeth etc. Medication seems to help for a while and then stops and he has to switch meds. Did anyone find out their facial pain was caused by something other than MS? For example, facial nerve damage from an accident or cluster headaches?

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Valerie | @lacy2 | Apr 7, 2023

Hi will try and keep short. Since June 2022 burning face, esp, cheeks whether face flushed or not, saw dermatologist Jan. and didnt think his field.. gave some ointment but said was a shot int he dark so I didnt use: waiting til end of April since last June here in Northern Ontario, Canada, to see Neurologist.... I have it now down one side of neck and ear and also have had P.N. in hands and feet for years coping with but now going up my legs and burning shoulders etc. comes on quickly... but started in right cheek and I thought a tooth issue but dentist says no ?? ,but not MS to my knowledge. The facial pain is burning as is the other now and I have wondered if: food; where I had molars out at dentist year or so ago; allergies; nerve endings; any of my few meds I take; stress; off gas from our natural gas furnace???? ... and have changed toothpaste, pillows, don't use laundry detergent just hot water/dryer etc. etc. The pain is quite bad can last up to five hours day or night, and only thing helps a bit are some small cool pads keep in fridge, not freezer: they hurt at first but then bring relief. I can get at any time during day or night and on top of other medical conditions its a bit much to cope with. Hoping Neurologist might know... I think it is nerve pain, I am 79.

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jjb6 | @jjb6 | Apr 7, 2023
In reply to @lacy2 "Hi will try and keep short. Since June 2022 burning face, esp, cheeks whether face flushed..." + (show)
@lacy2

Hi will try and keep short. Since June 2022 burning face, esp, cheeks whether face flushed or not, saw dermatologist Jan. and didnt think his field.. gave some ointment but said was a shot int he dark so I didnt use: waiting til end of April since last June here in Northern Ontario, Canada, to see Neurologist.... I have it now down one side of neck and ear and also have had P.N. in hands and feet for years coping with but now going up my legs and burning shoulders etc. comes on quickly... but started in right cheek and I thought a tooth issue but dentist says no ?? ,but not MS to my knowledge. The facial pain is burning as is the other now and I have wondered if: food; where I had molars out at dentist year or so ago; allergies; nerve endings; any of my few meds I take; stress; off gas from our natural gas furnace???? ... and have changed toothpaste, pillows, don't use laundry detergent just hot water/dryer etc. etc. The pain is quite bad can last up to five hours day or night, and only thing helps a bit are some small cool pads keep in fridge, not freezer: they hurt at first but then bring relief. I can get at any time during day or night and on top of other medical conditions its a bit much to cope with. Hoping Neurologist might know... I think it is nerve pain, I am 79.

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Hi Valerie. I am sorry you are having so much pain. There are a lot of medications that help with nerve pain so I hope your neurologist identifies something that will help you feel better. My husbands pain is all on his left side of his face. He describes the ear pain as the outside of his ear sometimes, but always in the upper part of left side of his face. It used to happen any time of day or night and it would last an extremely long time. We started calling them “attacks”. He has to pace around the room because the pain is so bad. He shakes and it’s almost like having a seizure. He is on different medications to keep the pain down, but nothing has completely taken it away. His neurologist now has him scheduled for an appt with a neurologist specializing in headaches to check for cluster headaches or migraines. It seems a lot worse than a migraine though. Cluster headaches were a thought early on. We are continuing to search. May your search lead you to something that will give you some relief.

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